"Look At Me"

Monday, February 24, 2014

People have always asked me how I knew Derek was autistic. I never really know how to answer. At the time, I didn't really know it was autism, exactly. I just knew that my son was not developing the way he was "supposed to be" according to the experts. Looking back now, it's seems so obvious it's almost laughable. (*Key word--almost.) Derek was diagnosed with what is considered "classic" autism. He's a poster child for it, actually. I've discussed this in other blog posts. How between 12 months and 18 months my son missed a bunch of milestones and started showing other red flags. He didn't wave. He didn't clap. He didn't point. He had no words at all. His eye contact became minimal at best. And he became obsessed with driving his cars back and forth, over and over again. Oh, and the only person who could hold him at all, was me. He flapped his hands. He climbed all over me, and the couches, and hid in tight places, seeking pressure. He also never graduated from eating finger foods like cereal and crackers. (He still hasn't, really.) I kept trying to get him to eat cut up bananas and spaghetti and lunch meats and he wouldn't go near them with a 10 foot pole. He wouldn't even open his mouth if I held it to his lips. He just turned his head and cried...

But I'm not talking about Derek today. Today I'm sharing another little boy's story. His story is a little bit different, and not so obvious.

This little boy was a difficult baby. From day one, things did not come easily for him. He had trouble figuring out how to latch on to nurse. It took several days. And a lot of screaming.

This little boy didn't sleep well. He only slept for 30 minutes at a time. So his mother put him in the stroller and went on long walks, because the movement helped him sleep. At night, the poor boy, and his mom, cried for hours on end. She thought it was just colic. But it wasn't. Any kind of noise would wake him up--from a door closing to a siren. She bought a white noise machine for his room. Sometimes, out of desperation, she let him sleep in his vibrating chair. She slept on the floor next to him.

The boy never learned how to self-soothe, despite his mother's best efforts. She read every book available, and tried everything everyone recommended. The little boy cried so hard and got himself so worked up that he would vomit. It happened so often that the mother invested in a steam cleaner.

As the boy grew older, things became a little bit easier...and a little bit harder. He was a very bright little boy, but he demanded a lot of attention. He slept better, but the child was stubborn and got frustrated easily. Disciplining him was a challenge.

At 18 months old, the boy knew all of his colors. He had an incredible vocabulary, and the mother was frequently told, "He speaks like a mini-adult!" Or, "He's like a little professor!" He also had an amazing memory and could spout all kinds of facts about dinosaurs--his favorite thing in the world.

Right before the little boy turned two years old, the mother had another child. The mother was overwhelmed and sleep-deprived. The boy was jealous. Life revolved around eating, sleeping, diaper changes, and well-child check ups.

The next few years were chaotic. The youngest child was diagnosed with autism. Life turned upside-down. Doctor appointments continued. ABA therapists were in and out of the house daily. So were speech therapists and occupational therapists. And the mother was so caught up with trying to help her youngest son, that she didn't realize how much her oldest boy was struggling. He was a very picky eater--but what kid isn't? (He wanted food to be luke warm. He couldn't drink milk straight from the fridge. His mother had to microwave it for a few seconds. Otherwise it was too cold. And he had to let chicken nuggets cool off, or they were too hot. Mashed potatoes made him gag.) He also showed signs of aggression and jealousy (she attributed it to the fact that his brother was getting extra attention and took him to see a therapist.) He continued to speak like an adult--except occasionally he spoke gibberish to others, or in a complete monotone, and his mother had to remind him to either "use his words" or speak "normally." He also showed signs of anxiety.

The boy was so nervous about starting preschool, that every day for the first two weeks (until he understood the routine), he vomited in the trash can. The teachers were nice enough that they didn't care. The mother just brought extra clothes and hoped it would get easier for him. (It did.) She thought it was because he was a Momma's boy. (It wasn't.)

As he got older, the boy's fixation on topics continued. After dinosaurs, he moved on to dragons. Then he switched to Presidents and which presidents were on what coins and dollar bills. Then, he moved on to Pompeii and Mt. Vesuvius. Then he switched to Minecraft (he LOVED the iPad and wanted to play it all the time. It was a problem.) Then superheroes. He became so fixated on a topic, he could talk about it and talk about it until he was blue in the face. He failed to recognize when others were bored of the subject or had no interest in the subject and was told by others that he was "annoying."

The boy had trouble making friends. His mom had to remind him to say hi to his friends when they said hi to him. He also played by himself often--running back and forth, bouncing and crashing off of furniture (proprioceptive dysfunction?) and fighting invisible enemies in his mind. He even did this at recess--because it was easier than trying to socialize with other kids. If other kids did try to join him, they often got frustrated because the boy made up his own rules to games, and he always won. If they left to do something else, the boy told his mother his friends were "being rude." He never saw himself as being part of the problem.

Sometimes, the boy said inappropriate things without realizing it. For instance, he'd tell his life story to strangers at the grocery store. He had no stranger danger, and his mother had to remind him constantly that there were certain things he shouldn't share about his life. He got bored easily, and didn't know know how to entertain himself.

Photo by Clay Lomneth

When the boy was in second grade, his teacher mentioned some concerns at parent teacher conferences. One, that the boy was struggling with writing. He had trouble with sentence structure, and remembering to capitalize the first word of a sentence and put a period at the end. Sometimes he had trouble getting his sentences to make sense. The letters of his words were also spaced too far apart, and he'd go straight into the next word without a space. So his sentences read like this: t h e d o g t o o k a w a l k. Two, his handwriting, even when he was really, truly concentrating, was not good. Three, his drawings were at a kindergarten level. So he needed help with fine motor skills. Four, he had trouble paying attention sometimes. But his math skills were phenomenal. He could add 2 six-digit numbers in his head easily and do multiplication--and the students hadn't even been taught that yet.

The mother had one thought after conferences: Uh-oh.

She thought about her son. He hummed when he was concentrating. "Hmmm. Hmmm. Hmmm."

He popped his lips. It became such a habit that he didn't even know he was doing it. But it drove his parents crazy.

He flapped his hands when he was excited.

These were all stims.

Suddenly, it all made sense. The mother realized that it was possible BOTH of her kids were on the spectrum.

She asked the school to go ahead and do the testing.

Sure enough...

What do they say? If you've met one person with autism, you've met one person with autism. I thought that Derek made me an autism expert. I was wrong. Sometimes, autism is easy to spot. Other times, a diagnosis is questionable. I thought I was going crazy. I thought I was being paranoid. I thought a lot of things...

I have two children. They are both on the autism spectrum. That spectrum is so very wide...

My boys are as different as night and day. One is high-functioning (asperger's). The other is considered "classic" and might live with me his entire life (I'm not being negative--it's just a possibility I have to face.) One speaks like an adult. The other is just learning to speak. One is serious and sensitive. The other is happy and easy-going. Both stim, but in different ways. They both have sensory issues. They both love water slides and french fries. They are also best friends.

I don't know what the future holds anymore. I know there will be challenges up ahead that I cannot even fathom at this moment. Some days I'm terrified. Other days, I know I'll be able to handle whatever life throws at me.

I know I'm not knocking balls out of the park, but I like to think I'm at least swinging at the pitches. This game is far from over.